On Thursday, the US House of Representatives overwhelmingly passed the Genetic Information Nondiscrimination Act of 2008 (GINA) by 414 votes to 1. The bill is expected to be signed into law by President Bush; it was passed unanimously by the Senate last week.
The bill prevents health insurers from treating their customers differently because of their genetic information. It also prevents discrimination in the workplace, reported AHN.
With today’s science, there are over a thousand genetic tests that show if a person has inherited any genes or genetic traits ( such as genetically coded proteins) that would predispose them to hereditary diseases, such as breast cancer, Parkinson’s, diabetes and heart disease. This means in theory that disease risk can be assessed before symptoms start.
GINA, when it comes into law, will make it illegal for an employer to differentiate among current and prospective employees based on genetic information, and for an insurer to change, cancel, or deny policies and premiums based on genetic information about their customers.
The bill has been hailed as the first major civil rights law of the 21st century, according to the Associated Press who reported, Francis Collins, head of the National Human Genome Research Institute, as saying:
“Your skin color, your gender, all of those are part of your DNA; shouldn’t the rest of your DNA also fall under that protective umbrella?”
The bill was drafted because people were too frightened to have genetic tests incase their employer or insurer found out about the results. This fear was getting in the way of the vast beneficial potential that genetic testing can offer.
According to Scientific American, the bill’s sponsor, Representative Louise Slaughter (Democrat, New York), who is a microbiologist with a Public Health masters, and who introduced the first genetic anti-discrimination bill 13 years ago, said:
“Since no one is born with perfect genes, we are all potential victims of genetic discrimination.”
GINA marks the start of a new era in health care, said Slaughter. It will now be illegal for a person’s genetic information to be used against them, a move that clears the way for Americans to “take advantage of the tremendous life-altering potential of genetic research,” she said.
It is hoped that this will also encourage volunteers in the US to take part in clinical trials without fear of genetic discrimination.
About 30 years ago, many black Americans used to find themselves discriminated against by employers and insurers because they carried the sickle-cell anemia gene, and according to Scientific American, there have been cases of employers telling employees they were undergoing routine health screening tests, for example for cholesterol, when they were actually being tested for inherited diseases so the information could be used in employment-related decisions.
A recent study by the American Management Association, revealed that over 60 per cent of new hires by major US companies have to undergo medical screening as part of the selection process. Of these, 20 per cent collect medical information on family background, 14 per cent test for susceptibility to workplace hazards, 3 per cent for colon and breast cancer, and 1 per cent for sickle cell anemia, said the Associated Press.
The only House Representative to vote against the bill was Ron Paul (Republican, Texas). He said he did not believe federal legislation was the best way to address concerns about the misuse of genetic information.
Karen Ignagni, president and CEO of America’s Health Insurance Plans said that GINA advances the principle already followed by many insurers:
“Health insurance plans are committed to protecting the privacy of patients while ensuring that they have continued access to high quality health care services in the emerging field of genetic medicine,” she told the Associated Press.
GINA is the first federal law to address genetic discrimination in the US. Many American states have already introduced their own legislation, both in relation to insurance and employment discrimination.
Sources: Scientific American, AHN, Associated Press.
Written by: Catharine Paddock, PhD